Patient Stories about Life with CSID

IMPORTANT SAFETY INFORMATION:

Patient Stories

Testimonials from Caregivers and Patients Treated with Sucraid®

Hearing the stories of individuals who have CSID and reading about their experiences provide hope for others suffering from the same disorder. All – including the parents of infants, toddlers, and young children – speak of the relief of finally getting a correct diagnosis and finding a medication, Sucraid®, that has helped to alleviate the symptoms of CSID.

Testimonials

Patient Story

Now with the Sucraid®, it’s opened up more options for me. With the diagnosis, I understand now what was causing me to have symptoms … But because I have Sucraid®, I can eat things that do have some sucrose and it keeps me from having pain when I eat them.

Stephanie, Patient Treated With Sucraid®

Sucraid® has made a world of difference for my son. I can’t speak highly enough about it. For the first time in his life, Brayden had solid stool and wasn’t continuously eating, trying to absorb a fraction of the nutrients he was consuming. Brayden can finally be a normal kid.”

Alyssa, North Carolina

From a life where plain protein is your only completely safe option, to enjoying a meal that kids your age can eat is phenomenal. Sucraid® is not having to live in fear. I don’t have to say No because I don’t have the ingredient list and the nutritional facts. It takes the diagnosis and opens up a world to these kids where they can have a lollipop or an ice cream, the cookie or cupcake, and they cannot be excluded.”

Andrea, California

I am so thankful to SucraidASSIST and everyone involved since I started oral therapy. The diet I started with had been the most challenging, yet most rewarding diet. I would barely get bloated; I don’t feel sick and can now control the bloating with small food portions and Sucraid®. There are still quite a few fruits, vegetables, and other foods I can’t tolerate much, but I feel so much better.”

Karla, Arizona

Without Sucraid®, I would be too fearful to ever eat out again. I would not be able to enjoy so many of the foods I love. I can’t imagine not having it [Sucraid®] because my options would be so limited, and my quality of life would be terrible. Not only just enjoying foods, but taking the time to prepare the foods without any sugar or starch is extremely stressful and time-consuming.”

Sarah, Indiana

Testing for CSID absolutely needs to become part of every GI doctor’s algorithm when treating patients who present with the associated symptoms! After being diagnosed myself, I tested my 16-year-old son, who also tested positive – because of this, he will now be spared a lifetime of frustrating symptoms and possibly going on the journey I had to, to find some relief. Sucraid® has made such a difference for me.”

Kelly, Illinois

When I got my first bottle of Sucraid®, my body was so depleted, starved, and weak, I could barely squeeze the bottle. A friend had to help me. It seemed to be working, or was I just fooling myself… By this time, I was avoiding most food (now I actually did have an eating disorder, caused by the trauma of not being able to digest food), and my brain was hardly functioning. It was hard to remember to take the Sucraid® with each meal, but mostly I did, and slowly my body began to recover, and I had the strength to keep going and eventually work with my doctor to figure out the complete picture and find the right treatment. In addition to Sucraid®, I take high doses of over-the-counter antihistamines and my life has changed completely.”

Mary Jane, Massachusetts

It was incredible taking Sucraid® with a meal for the first time. I’ve been able to go back to work. It took a while to walk inclines, but I began hiking little by little, and, eventually began hiking mountains. General eating, even on restricted diet, without Sucraid® brings on sudden and severe symptoms, certain foods more than others. Without God and the help of Sucraid®, I would not be here today. God blessed me with it right on time.”

Michelle, Florida

After years of not being heard and starting to believe this was in my head, I now know how to control my symptoms with diet and Sucraid®. Since I have been on Sucraid® and trying to stay on the diet, I am doing well. The people at QOL Medical and US Bioservices have been great! I have no problem getting my medicine or any questions I have answered.”

Cheri, Louisiana

Sucraid® helps by doing what our bodies cannot do very well – digest sucrose – and that could mean fewer symptoms and more options. Sucraid® provides us with more food options and with the possibility of larger quantities within those food choices. Starting Sucraid® brought the ability to tolerate such things as fruits other than berries and lemon, the ability to avoid carefully scrutinizing food content and constant sucrose-gram counting, and eventually the freedom to occasionally eat more popular, sucrose-containing foods like pizza. Sucraid® also brought dependence with it, which is sometimes hard to accept as you carry your medicine cooler everywhere, but with the acceptance of that dependence comes more freedom.”

Aileen, Michigan

When my son was first diagnosed with CSID and I realized how much his diet needed to be restricted, I thought it might be near impossible and I feared his diet would be so restricted that it would be unhealthy. And I was already experienced at doing restricted diets with other family members. Sucraid® made my son’s diet (and my life!) more manageable. After a year or so with Sucraid® therapy, my son felt like he could eat more like a normal kid!”

Kristi, New York

Overall, I cannot thank QOL Medical enough for everything – the availability and overall assistance in relation to what Sucraid® has done for me.”

Debra, Minnesota

My son is now able to drink infant formula and eat sucrose-containing foods that would normally cause severe, frequent episodes of diarrhea and weight loss. As a mother, it is devastating to watch your baby deteriorate before your eyes and not know what is causing him to react to certain foods in this horrifying way. To get the proper diagnosis and then to be able to manage his diet with the right foods and Sucraid® has been just what we needed.”

Briana, Florida

Read More Testimonials

I like Sucraid® because then my tummy doesn’t hurt.”

Anni, 10-year-old patient, Michigan

With Sucraid®, I have more options to eat the foods I want to eat from anywhere, like what I cook at home, to eating out, and in different parts of the country and their cuisine.”

Cole, Oregon

Sucraid® has helped Ashtyn with having less loose stools. She has been able to gain and maintain weight since starting Sucraid®.”

Kelli, Texas

These statements reflect individual experiences and should not be used as a substitute for talking with your doctor about whether Sucraid® is right for you. Your doctor can discuss the benefits and risks with you. Each patient experience is unique and QOL Medical, LLC does not provide any warranty or guarantee as to the response a patient will have to Sucraid®.

Videos

Stephanie Mass

Diagnosed at Age 36

Addie Rabon

Diagnosed at Age 20 Months

James O’ Daniel

Diagnosed at Age 2 Years

Making Informed Choices with CSID

QOL Medical contributed financially to the production and air time of this video, which appeared on the Lifetime Television Network. Dr. William R. Treem, who appears in this video, is a pediatric gastroenterologist who has studied and treated patients with CSID for years. At the time this video was made, Dr. Treem was a paid consultant of QOL Medical and was compensated for his time in participating in this video. Please see the indication and important safety information for Sucraid® (sacrosidase) Oral Solution below.

Share Your Story

QOL Medical is interested to hear from those affected by Congenital Sucrase-Isomaltase Deficiency, patients and caregivers, regarding their experience with Sucraid®. Please click below to share your story.

Important Safety Information for Sucraid® (sacrosidase) Oral Solution

  • Sucraid® may cause a serious allergic reaction. Patients should stop taking Sucraid® and get emergency help immediately if any of the following side effects occur: difficulty breathing, wheezing, or swelling of the face. Care should be taken when administering initial doses of Sucraid® to observe any signs of acute hypersensitivity reaction.
  • Do not use Sucraid® (sacrosidase) Oral Solution with patients known to be hypersensitive to yeast, yeast products, papain, or glycerin (glycerol).
  • Although Sucraid® provides replacement therapy for the deficient sucrase, it does not provide specific replacement therapy for the deficient isomaltase.
  • Adverse reactions as a result of taking Sucraid® may include worse abdominal pain, vomiting, nausea, diarrhea, constipation, difficulty sleeping, headache, nervousness, and dehydration.
  • Before prescribing Sucraid® to diabetic patients, the physician should consider that Sucraid® will enable sucrose hydrolysis and the absorption of those hydrolysis products, glucose and fructose.
  • The effects of Sucraid® have not been evaluated in patients with secondary (acquired) disaccharidase deficiency.
  • DO NOT HEAT SOLUTIONS CONTAINING SUCRAID®. Do not put Sucraid® in warm or hot fluids. Do not reconstitute or consume Sucraid® with fruit juice since the acidity of the juice may reduce the enzyme activity of Sucraid®. Half of the reconstituted Sucraid® should be taken at the beginning of the meal or snack and the other half during the meal or snack.
  • Sucraid® should be refrigerated at 36°F-46°F (2°C-8°C) and should be protected from heat and light.

Indication

Sucraid®(sacrosidase) Oral Solution is an enzyme replacement therapy for the treatment of genetically determined sucrase deficiency, which is part of Congenital Sucrase-Isomaltase Deficiency (CSID).